Making Playlists for My Inevitable Funeral
And other considerations regarding death
(please note that this was originally published on March 21st, 2021. I am archiving it here as the place it was first published no longer exists. All events documented here reflect ways I felt two years ago. I am not proud of the pessimism I displayed, but it was honest and I was struggling to face grief and my own body. Make of it what you will, but please try not to let it alter how you know me today, if you know me.)
[when I was hospitalized in May of 2019 for a pulmonary embolism, wearing biohazard bags on my arms in order to prevent my IV sites from harm during a shower]
I have written this essay three times. I keep finishing it, rereading it, and deleting it. Today I’m forcing myself to share what I have. I still hate it, but I am destined to be dissatisfied with anything I write because I simply cannot use any amount of narrative or clever phrasing to give you more than a tiny piece of the feeling I wish to convey. This is true of all experiences, to be clear, but I have decided for some reason that this story (or perhaps this web of stories) is too important to me to simply leave as a tidy collection of words. It’s messy. It’s horrifying. It’s beautiful. It’s mine. And I fear that nothing I write, whether a concise summary or a small novel, will impart any of these things upon you. Yes, I am writing it for you. Not for me. I already know these stories. I craft my inner mythos every day. I am trying to unburden myself, to discard some of my own history in a form that will allow it to be shared, for some of the ugliest most vulnerable pieces of me to be given to the cruel unknowing force of the internet so that someone else might see and understand and connect. All communication is born out of a desire to connect. I hope that you will understand me.
—
Two years ago today, after months of knowing that something wasn’t going right with my body in relation to my previously diagnosed ulcerative colitis, I finally ended up in the hospital. I’d been shitting blood thirty times a day despite taking an obscenely high dose of steroids. I’d modified my diet from a moderately healthy diverse pescatarian lifestyle to the point where I was eating nothing but saltines and chicken noodle soup from a can (one of the only foods I could hold down for more than five minutes). Ascending the subway stairs from Union Square Station to walk the three blocks to the doctor’s office, I nearly collapsed. When I awoke from my colonoscopy to the doctor making arrangements for me to go to the emergency room at Mount Sinai Beth Israel, I was relieved. I didn’t believe I was dying, but things were out of hand.
I spent 12 hours in the emergency room waiting for a bed. I ended up having the “window seat” in a room with a man who was on painkillers for something horrible going on with his foot. He asked a Korean nurse if he “knew karate tricks” and loudly complained about the food while watching Fox News. The man was a caricature and I was in a hospital bed suffering without many answers. After 24 hours in this limbo, I was transported via ambulance to the main Mount Sinai Hospital location on Madison Avenue and I was placed in a private room on the 10th floor in a wing for people with conditions like my own. In the morning, a whole crew of doctors came to visit me as if I were Dorothy and the road to the hospital had been my own hellish Yellow Brick Road.
I spent a week in the hospital. I was given a treatment plan. I improved. The details are depressing and tedious. I can remember the way the time passed. The way each nurse treated me, ranging from delicate and friendly to cold and business-like. I remember my fears, my hopes, and the terrifying potential futures that presented themselves to me. I could write a whole essay about the seven days I spent beginning my recovery, but this is not that essay. What matters is that it was my first of two brushes with death in a short period. Despite my assumption that I just had an issue that needed correction, I was teetering on the cusp of developing toxic megacolon. Had I waited a few days longer, I might not have a colon today. Or I might have died, but speculation is pointless and at the time I was too tired and unaware to realize the danger I was in. For now, I have a colon. As anyone with ulcerative colitis knows, the possibility of needing it removed will always loom even when my health is consistent and favorable.
Six weeks after my discharge, I returned to the hospital with a pulmonary embolism. This time, I knew the risk. I knew that my recovery was entirely a roll of the dice. I experienced great pain, but with blood thinners and some good rest, I turned out okay. I felt lucky. Sometimes I still do. Other times I look back on the two years that have passed since and I wish I’d been able to peacefully die just before my 32nd birthday. My family sent me flowers. My then-girlfriend by my side constantly in loving fear, sleeping in the chair in my hospital room. My friends cheering me on. A legacy of all I could have done had I only survived, rather than all the disappointments I am sure to create as I continue to do nothing with the “vast potential” I’ve been told I contain. I dream of the “died after a battle with xxx” narrative sometimes. It is not a joyous dream but it is an easy dream, and nothing about my life has been easy since I cheated death a second time and left the hospital in May of 2019.
—
Recovering from a major health crisis necessarily demands a degree of delusion. At least for a while. Had I grasped the severity or permanence of my state at the time, I don’t know if I’d have committed so fully to my own self-betterment and may well have remained stagnant and horribly ill. I spent months thinking that “full recovery” was just a few weeks away. I spent my 32nd birthday in June of 2019 thinking that I’d surely be back to work soon and while I was still in great pain and uncertainty, I viewed it as a tiny “last hurrah” of a disability-induced break from life. I have not yet returned to the workforce.
After 8 months of “recovering” from my initial descent into the world of hospital machinery and being poked and drained like some sort of test subject, I gambled on a cross-country trip with my then-girlfriend and another friend of ours. It was mid-November 2019. We flew to California to surprise a good friend. I might have inadvertently ruined the surprise, just a bit. I still feel guilty to this day. The gamble mostly paid off, but I also lost in a couple ways. Renting a cabin with a bunch of friends to make music in Point Arena seemed like a great idea. It was for everyone but me. The frustrating reality of ulcerative colitis, especially at such an early stage in my healing, is that I don’t often have the luxury of “holding it in” when a bathroom is unavailable.
The greater gamble I took, however, was not going out of my way to detour to see some of my own old friends in Sonoma County. It just didn’t fit into the itinerary. My friends Joey and Howard in Petaluma and Santa Rosa (respectively) both understood but were sad I was so close but so far away. Less than a week after I returned home to New York without seeing my friends, Howard was murdered in his own home. While I (perhaps naturally) struggle to extend forgiveness to my best friend’s killer, I also struggle to forgive myself for missing my final chance to visit with him alive.
On New Year’s Eve leading into the new decade, we decided to go to the opening party for a new venue and bar in our neighborhood opened by a couple friends (or friendly acquaintances perhaps, I don’t want to give myself more credit than I’ve earned). After a lovely dinner out, my body collapsed in on itself about twenty feet from the entrance to the venue and my guts exploded. I went home to shower and returned to the bar an hour later or so. I was distracted and preoccupied all night. I tried to have fun, to be lost in wonder, but I simply couldn’t. But I had to enter a new decade in celebration rather than defeat. At midnight, I forgot to kiss my partner. Ill omens and all. You know the story.
On the 2nd of January 2020 I returned to California to speak at Howard’s funeral. I don’t remember what I said, but I’ve been told it was beautiful and honest. I hope that’s enough to make up for missing out on a last chance to have a drink together. I spent a couple days with the few other friends I have in California who haven’t turned into libertarians or the kind of people who think yelling “Slayer” is a personality and it was good for my heart despite the pain of the occasion.
Following Howard’s memorial, I came home only to visit the hospital for an inpatient stay once more, this time for kidney stones. Not life threatening, but violently painful (and rather dramatic—pissing blood looks far more impressive than shitting it). I spent about a month dancing from morphine to tramadol to a heating pad until I finally pissed out something that looked like a tiny sliver of coral. I lost a couple tiny stones like this and, had a urologist not required them for study, I’d have loved to keep them to marvel at how strange and disgusting they were.
As I came back to a world outside of the beautiful and frightening dream of opiates, the sun was also returning. March 8th 2020. My girlfriend and I decided to wander the neighborhood and visited a couple bars in the afternoon before making our way out to the same venue where we’d entered the decade for a photography showcase. It was the last day I would be out, as another attendee contracted the coronavirus and everyone else who had visited began our personal lockdowns a solid week before the rest of New York.
After this point, time became less of a meaningful marker. On June 7th, my maternal grandfather died. Not of covid. He was a bigoted man, afraid of the world, and while I’m glad I spoke with him a few days prior to his death, my sadness was more for the burden on my mother and grandmother. On June 9th, I celebrated my 33rd birthday in isolation with my girlfriend. She made a video sourced of many of my friends telling me the value I held to them. I cried while I watched it. It was beautiful. I haven’t seen it since. It was a painful, lonely day, but I tried to enjoy it. On June 11th, my paternal grandmother died. Not of covid. She was a strong, beautiful woman who broke barriers in the world and in her own family. She had a gift of vision that cut through pretense and she often used it to help me better understand myself. Her death created a strange void that only grows over time, although I do try to incorporate her love and wisdom into my daily activities and thoughts.
On August 8th, it became clear to me that my girlfriend and I were drifting apart. I know this because I marked the date by posting “The Asphalt World” by Suede to my personal Facebook page. Perhaps a bit vague and dramatic, but an accurate marker of time. On August 11th, it was officially over. On September 20th, her birthday, she left me alone for a week so that I could prepare to move out as October approached. I did a poor job of this, instead relying on some of my beautiful friends to keep me from taking myself to places too dark to come back from. I spent an afternoon having a beer with my friend Baxter, discussing the brilliance of the band Magazine and trying not to think about things. I spent a couple days sleeping in a guest room in my friend Leyla’s apartment and visiting with her pets. My friend Irene paid a visit while I was packing and listened to black metal with me for an hour or so. These three small moments felt like they saved my life.
On October 3rd, I spent my first night in my new apartment. On the 1st, I painted and cleaned my room. The space was filthy. On the second, I brought over a couple things. On the 3rd, I brought in an air mattress and began my slow process of migrating from one apartment to another about 3/4 of a mile up the road. It took nearly a month to fully remove myself from the old apartment into the one I now call home. During this time I paid regular visits to the cemeteries of my neighborhood, one of the few safe locations during a pandemic. Parks are crowded on sunny days, but the cemetery is always open. In the absence of another human to constantly distract me, I found myself visiting with death more and more. I dreamed of the people I’d lost in the past year. I dreamed of the people I’d lost in years farther back. I wondered why beautiful people who enriched my life were gone and why I had lived thirty-three years, achieving nothing, and having the good fortune to survive things I had no right to survive. I didn’t attempt or want to end my own life, but the entirety of my continued existence in a world without my loved ones felt like an injustice. It still often does.
On January 6th of this year, another friend of mine died unexpectedly. It stings and it cuts, but I also find myself alarmingly numb to new deaths at this point. It’s another person I love who becomes a person I loved. A shift in tense. A presence adjusted, not removed. I’ve spoken at two funerals in the last sixteen months. One in person. One via zoom. I’ve been told I speak beautifully at funerals. I wonder who will speak at mine. At the bar after Howard’s funeral, I was given free reign of a jukebox as the “musical friend” who could curate appropriately.
I’ve often thought about songs that I would like someone to play at my funeral. I think about making the clear faux pas of telling a friend I wanted “Heaven” by the Talking Heads played at my funeral when I was 21. His discomfort was palpable and he passed it off by trying to tell one of our other friends how “deep” I was. I remember being the passenger in a car driven by someone I dated a long time ago, listening to "Sirius" by Pelican as we descended into fog from the peak of a bridge in Florida. I remember thinking how dramatic it would be to have that song play as my casket is lowered. Now I feel embarrassed by the thought of romanticizing my own death, and yet every day I add to the "playlist." All I am, all I have ever known myself as, is someone who obsessively burrows into sound and makes a nest of it. I don't know how to carve out my own shape when all I think about is sound. Who will describe me when I die? Will their words be beautiful? Will they know me as I wish to be known? Will they play songs that would embarrass me or songs that represent my experience of the world?
I wonder about secrets. The kind of secrets where someone constructs a version of me in their head that is not known to me. How many different people am I and how many minds are creating and recreating me by the day? How many people in my universe barely perceive me at all? How many people think of me often despite never interacting directly? If only death itself could reveal these things without placing its permanence and silence upon me.
Sometimes I wish I'd died just before I turned 32, but sometimes I hope I can create a life of achievements worth eulogizing beautifully. I didn't used to think about death so much, or what it would mean to die. I didn't have experience eulogizing people I loved and I didn't have anything other than potential. I have lived a lifetime of sorrow in 24 excruciating months, but the sun is out today and it is beautiful. I think I will go for a walk in my favorite cemetery, where mausoleums line the road and you rarely see other living humans no matter where you look.